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Monday, January 23, 2017

On a personal note

My daughter is 12 in April. When I started this website, she was only five (here's a video of her, just a year after launch explaining my logo and masthead at the time). Many of you have stuck around to watch her grow up either through our Facebook friendship or through the occasional post here. For those who don't know, my daughter has Austism Spectrum Disorder and is very high functioning. So high functioning that when people meet her for the first time, many comment how "normal" she seems. No doubt, she's pretty well adjusted, but she has demons she fights. And now that she's older, she's getting better at expressing to her dad and I how these demons affect her.

She has difficulty explaining the sensory experience to us. On Friday night, she dropped a bomb on us by blurting out at dinner that music class makes her want to scream because it's too much. All of it - the drums, the clarinets, the horns, the piano. With tears threatening, she told us she can't take much more and asked if we could call the school and tell them she wanted out. I was surprised. She's always gotten As in music. She plays a mean recorder (the Friendly Giant would be proud). Music class has been part of her schooling since grade one. This means that for the past five years, she's been dealing with how it affects her but couldn't tell us, or her teachers. How awful, right?

Not wanting to lose momentum since she was willing to share, her dad and I asked her to tell us what else she finds difficult, whether it's auditory or physical. In no particular order she listed:

construction paper
corrugated cardboard
white glue
braided rope
tissue paper
the sound shoes make when the floor is wet
warning chimes (like on a car)
fire alarms (I think this is 99% of the planet, really)
crowds
babies crying (probably not unique to her autism)
people screaming (like at a waterpark)

She said sometimes it's so bad, she feels like she's going to vomit, if the sound or texture is too much.

I'm not one of those bloggers who uses my readership to openly bare my soul and solicit opinions about my personal life. Over the years, I've written about my health struggles (still ongoing, but improving) and my immediate family. Despite some serious and epic trolling, generally the readership is very supportive, which is why I am reaching out today. You don't have to comment, if you think you can help, you can shoot me an email (cj@thiscrazytrain.com) if you know anything about autism sensory issues, either because you have them yourself, or you've supported others with sensory issues and have some knowledge you can share.

We've reached out to her developmental pediatrician (I left a voicemail this morning), who officially diagnosed her at six years old, and are hoping for an appointment, but her waiting list is extensive, sometimes up to a year out for a booking.

I don't rely on Google for diagnosis since there's so much misinformation. I will also be engaging the school.

One thing she has asked us for is an autism swing claiming she feels this will help her decompress after school (which tells me she's been researching her autism). Even that is difficult to Google since there are many products proclaiming to be a sensory aid. It's all so overwhelming.

My goal is to teach her to cope since the real world isn't always going to be accommodating and easy. But I need someone to tell me how to do this. I don't have autism. I don't know where to start.

9 comments:

CJ, I think one of the things your loyal readers appreciate about you is your candidness. I know three families who were affected by childhood illnesses (two brain cancers and one leukemia), two of which resulted in slow and horrible deaths. So I'm sure your daughter's challenges are causing a lot of stress for your family right now, but put things in perspective and be thankful that she's healthy. I have no doubt that your family will find a way to make her time at school more comfortable.

I don't have any suggestions but this post is really touching and I just wanted to offer my anonymous internet support, for what it's worth. It's obvious you're a wonderful parent and I wish you and your family lots of success in tackling this together.

You know what? You guys are great. I've received some kind and supportive texts and emails. Turns out quite a few of this site's readers are dealing with similar situations. I like that we are all helping each other. I appreciate the support.

My suggestion is that if it's clear she's been doing her own research, and has identified an Autism chair as potentially helpful for her, have her show you which one she wants. There's probably dozens of products claiming to be sensory chairs, but if she wants one that is more like a hammock, or more like a box, or like a hang-glider, or whatever, if she picks it, it will probably be more successful than you trying to guess.

It's great that she is high functioning. I'm sure it's helpful to have her perspective. My brother in law is so low functional that he's non-verbal. When he gets frustrated, like REALLY frustrated, he bites his clothing and breaks (or even pulls out) his teeth. I wish something like this would be useful for him, but he won't sit still long enough to use it.

That's great advice and a route I decided to take. We bought the swing together. It arrives Friday. She's very excited. And it's true that although her autism causes her challenges, she's far better off than others

Wow. I wonder if my wife and I will receive a bomb like that our my 7-year-old highly functional ASD son grows. He's generally pretty good at letting us know what things he does or doesn't like. But, he rarely ever talks about what he does at school, so who knows. We know he has sensory issues. And we try to do our best to help him deal with them. We bought a swing and a trampoline, and he loves both. We find it's a matter of trial and error with products like that. Some things help, some things don't. Have you been to, or has your doctor recommended Grandview? We attended a Sensory Processing Disorder seminar there not too long ago. Very informative.

Hi David!Thanks so much for your note. It's amazing what comes out of nowhere these days. Funny you mentioned the trampoline. The kid has begged. I say no because she's so accident prone. The swing should do the trick but it hasn't been delivered yet. We did Grandview when she was little. Now we work with Dr. Kirkpatrick in Uxbridge. I will call theme about the seminar. That will help.

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